9.27.14 Dedication – Claire

I am so glad that I can say personally how CUTE Claire is. Her family hosted me in Vegas. Yes, it is her sister Abby that is my very special moon friend. Claire is a very happy toddler. She works so hard! Her smile is definitely contagious!!!!! I am so proud of her, she started take independent steps recently!!!! I can’t wait to see her again (and Ms Abby). Yes, parents Kate and Jeff and their whole family are really really nice too! Shout out to Mr Camera Productions in Vegas too!

claire in the ball pit

“Our daughter, Claire, is two and a half. She’s a little girl who loves many things: playing in her ball pit, banging on the piano, playing “roll the ball” with her big sister Abby, shaking maracas, and popping bubbles. She also happens to have Williams Syndrome. Having Williams Syndrome is just one of the many aspects that make up her total character.

Our journey with Williams Syndrome (although we didn’t know it) began before Claire’s birth. Claire didn’t grow as quickly as she should have while in the womb, and our high-risk pregnancy doctor found something different with her heart. She was born at 36 weeks at a lean 4 lbs 6 oz. She was such a tiny little thing – but oh! She had the loudest screech EVER! Like a little baby pterodactyl! When we were able to take Claire home, we were distressed by how miserable Claire seemed to be. She couldn’t eat, couldn’t sleep, and would screech and cry for hours at a time. As the months progressed, we started noticing developmental delays. She started to bang her head on the floor and would head-butt people out of frustration. It seemed that we lived that first year going from neurologist to gastroenterologist, pediatrician to ophthalmologist, to cardiologist to other specialists, never getting answers of how to help her.

And then when Claire was 11 months old, her cardiologist casually asked me if I had ever heard of Williams Syndrome. No, I replied, but I’ll look it up. A few days later when I looked at the Williams Syndrome Association website, it all clicked. I recognized Claire’s sweet face in the pictures of babies with Williams Syndrome. Everything moved quickly after that. She had a microarray done that confirmed what we already knew in our hearts – Claire has Williams Syndrome. She was diagnosed with hypercalcemia and hypertension. We have been able to control the hypercalcemia with a specialized formula and hypertension with medication. She has had two eye surgeries, one that appears to have corrected her strabismus. She recently had a heart procedure that ruled out major heart issues. Claire had major dental surgery to extract most of her teeth a few months ago. Claire has fantastic speech, occupational, and physical therapists that challenge her. Claire consistently impresses them all with her tenacity, perseverance and hard work every session.

I won’t lie – the first year and a half since her diagnosis hasn’t been easy. We’ve learned to take each thing as it comes. We’re thankful for every piece of good news and every positive development. We’ve also learned that there is an amazing community of people that are walking similar paths. I am so thankful for the support groups that have welcomed my family with open arms. To have the support groups as a resource for knowledge sharing as well as having a safe place to share frustrations has made a huge difference for us.

Claire has changed so much in just the past few months. She is now taking steps on her own, although her preferred method of getting around is crawling like lightning. She doesn’t speak or babble, but she doesn’t shriek as much anymore. She may only have a few teeth, but her favorite foods are steak and popcorn! She can clap her hands together now, and is beginning to communicate via sign language. Claire has an eclectic taste in music that stretches the gambit from Daft Punk to the opera “Carmen”. She loves being read “Ten Tiny Tickles” over and over again. With every passing day, Claire is displaying more of her personality which is infectious to all that meet her.”

2 thoughts on “9.27.14 Dedication – Claire”

  1. Bro I googled your name and a bunch of stuff popped up. From. News reports of your family to your dog hitch. You are a fantastic person. Kevin and Dan are two of the most influential boys I have met in a very long time. It’s was great getting to know you over the past 24 hours and getting the chance to chill and get to know you both. You two guys are going to be legends here in South Dakota. You touched the hearts and minds of many here and from your story influenced many others. Vermillion will always be a place for you two men!! I personally had a great day getting to know you two. Have a safe journey all the way back home. I know your families must miss you both. You better return to Vermillion SD as students. Or visitors Eric Cody and I had a great time. And Wish you well in all you do!! Safe travels from South Dakota

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